August 27, 2012

My Daughter's Story {Overcoming Verbal Apraxia}

This is a story I love to share. My oldest daughter's speech difficulties and development is actually a huge reason why I began blogging years ago-to share our own story.

In February of 2009 (at age 27 months) Big Sister was diagnosed (not just suspected) with verbal dyspraxia (also know as apraxia or Childhood Apraxia of Speech). Her therapist suspected apraxia, and after reading about it (which was incredibly hard) and clearly seeing the signs for myself, I scheduled a formal evaluation.

In short, dyspraxia/apraxia is a neurological disorder that affects communication (and often movement). It is not outgrown, nor is it a muscle issue. Instead, the brain is not able to tell the muscles what to do.

Big Sister's Story

I knew something was different about Big Sister as a baby. She was a happy baby, but she did not babble. She had no sounds, not even after her first birthday. She did not have throaty sounds...her only sound was mmm-mmm and only when she was eating. (She still does this occasionally at age 5.) Big sister did giggle and laugh. She cried. That's it. Another item to note is that she could not latch on when nursing.

Most people tried to encourage me/us telling us about how children learn to walk when they are one and talk when they are two. Or how lots of kids are late talkers (like myself), and then start talking in sentences. Many thought we were crazy to teach her sign language to facilitate communication since she would use signs but not words, even after she was two years old. Some thought we just didn't try to encourage her to talk. None of that was true. Most would suggest that she would talk when she was ready.

When Big Sister was 15 months old, her pediatrician suggested a hearing evaluation and a speech evaluation. (At her one year appointment, we discussed the speech concern, and were comfortable to wait three more months. After all, not much can be done at that age.) We returned twice for the hearing tests, but they were not conclusive. She began therapy shortly after her speech evaluation. We began therapy knowing we'd be moving about two months after beginning it. Prior to the move I scheduled another evaluation/meeting to make sure she would not be without services in our new county and state. (In both Maryland and Pennsylvania children under three are provided speech therapy services through the county/state.)

Big Sister had been working with her new (and very much improved) Speech and Language Pathologist (SLP) for about five months. It was December of 2008. She had had her second birthday in October. Though she may now have had a couple word approximations ("no" comes to mind) by this time, we had seen almost no change. I asked the therapist what could be happening with Big Sister. It is rare (and a red-flag for apraxia) when a child does not respond to therapy.

What she said was that she had been building Big Sister's therapy on the idea that she could have verbal apraxia, while still meeting the previously established goals and objectives. When she left that day's session, I began researching. And I cried-after just a few minutes of reading. I saw the signs clearly for myself. At its worst it's horrible, and doesn't only impact speech. Often children with it have a very difficult time in the classroom, especially with math and reading. I'm certain my emotions were no different than any other parent who has a special needs child...mild or severe. (If you suspect verbal apraxia, you really should read the book The Late Talker!!)

Knowing an actual diagnosis might enable more intensive therapy for Big Sister, which is crucial for apraxic children, I set up an appointment for a formal speech evaluation at the local children's hospital. She was diagnosed with Expressive Language Disorder and Verbal Dyspraxia (another word for apraxia) and a couple other things that weren't as severe. She went from once a week therapy to twice-a-week with our SLP and a once-a-week teacher visit. Both the SLP and teacher were excellent, and I truly believe what they did with her, and what they taught my husband and I to do, made the biggest difference. We understood we were our child's advocate and teacher and what we did with her was incredibly important.

It was in a therapy session shortly after her diagnosis, using Play-Doh, that Big Sister first said "Muh." Then it became a slow, "Muh-Muh." Eventually it became "Muh-mee." I've been "Mommy" for a long time now. And sometimes it makes me nearly cry.

By age three, M still could not say a nursery rhyme or sing happy birthday, but her progress was remarkable. Her vocabulary always growing. She was attempting words on her own, unprompted! Granted, almost all of these words were still word approximations, but she was talking! Her birthday brought changes though. We said goodbye to her teacher and therapist which was really hard, but required as she had "aged out" of the birth to three early intervention program.

The day after her third birthday we sent her to a special needs preschool with a speech and language classroom through the Intermediate Unit. Oh, and our little girl rode a school bus, complete with car seats with five-point harnesses. Our social little girl blossomed at school where she was not only in a classroom with an SLP for a teacher, but she was also working with another SLP three times a week at school outside of the classroom.

She remained at the school through the school year and summer. We were told that Big Sister would benefit from a regular classroom (preschool) for both speech and academic reasons. Before she was four years of age, she was considered to be speaking mostly age-appropriately. Remember, at age three she couldn't sing a nursery rhyme or song?

Big Sister continued with therapy for another year or so, beginning about 15 months until she was close to five.

What about now? Big Sister is about to enter kindergarten and will turn six years old in October. She has pretty much overcome apraxia. She will likely need therapy again. (We'll have her evaluated after her birthday.) I doubt she will ever need intensive therapy again. Obviously, her apraxia was fairly mild, but it is exciting what she has overcome. Even as her parents, we still struggle to understand her occasionally. She has an extensive vocabulary though. Not only that, academics are not a concern, like they are for many apraxic children. She can read (chapter books up to 120 pages) and enjoys math, including basic addition and subtraction. She has always been eager to learn and retains information amazingly well from her environment, experiences, books, and even television. She loves to sing and even makes up new songs to familiar tunes. No one would suspect her speech history.

Derek and I have prayed for her speech, just like we prayed about her SVT, and Brother's seizures. To God be the glory! We know that her (and our) hard work through early and intensive intervention and people that care... have been used by God to help her in this journey...and He will help us through the next part, too!

I share to encourage and educate. I want others to know that sometimes, though not typically, there is something more happening in a child's brain...something that will not be outgrown. Though it's good to encourage parents of nonverbal children, it is important to be realistic and listen to their concerns. For those of you who have a child with a serious speech disorder, know that not all children are worse-case-scenario. And no matter what a child's difficulties are, it is important that their hurdles do not become their identity. Or yours.(Click link to read more about that!)I have also written about aneffective SLP (speech therapist). We also created an ABC Sound Booktogether which is perfect for children with very limited speech and celebrates what they CAN say!Please remember you can always leave a comment or email me with any questions. (thissimplemom AT gmail DOT com)

20 comments:

Such a beautiful testimony full of encouragement. I can only say I am blessed to hear her sweet voice telling of her latest adventures, and look forward to hearing all about her kindergarten days, which I am sure you and Derek are as well :-)

Every time you post about this I learn a little more and a little more about what you all have been through as a family and what she has accomplished through hard work! It's such an awesome story. Thanks for sharing.

Thanks for sharing you and your daughter's story. I had never heard of apraxia and I'm sure there will be lots of visits from parents that are searching the internet and stumble across this. I'm sure they will glean knowledge and encouragement from your story.

Thanks so much for this post. My son, Jake is about to turn 4 and has apraxia. I love hearing success stories. They give me hope that one day my boy will be able to communicate. I'm glad your daughter isn't having any trouble academically either. Great news! www.jakes-journey-apraxia.com

Oh wow, Your story is amazing, I have just begun what will be a series about my own experience with my son Thatcher and Apraxia. It is amazing how well your daughter is doing. We live in Maryland, do you? I would love to talk to you sometime. My name is maria. You can see my post on www.themotherhuddle.com

This is so powerful. I am a christian and also a mom with a sweet little boy who has overcome lots of obstacles already but now at 21 months has a speech delay and they have mentioned apraxia. Rather than googling apraxia... I googled "apraxia success stories". Can't wait to post a beautiful testament to God's power like you have. ALSO this is SO powerful: And no matter what a child's difficulties are, it is important that their hurdles do not become their identity. Or yours. I needed to hear that today! :)

This is so powerful. I am a christian and also a mom with a sweet little boy who has overcome lots of obstacles already but now at 21 months has a speech delay and they have mentioned apraxia. Rather than googling apraxia... I googled "apraxia success stories". Can't wait to post a beautiful testament to God's power like you have. ALSO this is SO powerful: And no matter what a child's difficulties are, it is important that their hurdles do not become their identity. Or yours. I needed to hear that today! :)

My son was diagnosed with this today at 3.5 years of age. We have had him in Speech for a year and 1/2, so I am disappointed it was not diagnosed earlier. The news we got today was devastating, but reading your story has given me hope.

My son had severe dyspraxia, he was top of the range hyperactive and used makaton to communicate...it now presents as dysgraphia an inability to write...He has gained a 2.1 degree and has a successful job with a major finance company...He has a great character and is a great perseverance I am so proud of him!

So wonderful to read about her success and, since I know her IRL, so wonderful to see how intelligent and well spoken she is! Hoping we parents whose children with apraxia was not overcome will take comfort from knowing: Not being able to speak is NOT the same as having nothing to say! Always assume competence ... always assume awareness. And always pray. :)

I was recently told by a speech path the university that I work that there is no scientific correlation between level of apraxia and intelligence (IQ or other measures). One of my twins may have apraxia. He and his twin brother are 2.5 y/o. His brother has a bad speech and comprehension delay, but is getting better with a lot of new words. Both are in our state's First Steps program. Out speech therapist says she is working in some apraxia exercises even though he's too young to be diagnosed yet.

I was recently told by a speech path the university that I work that there is no scientific correlation between level of apraxia and intelligence (IQ or other measures). One of my twins may have apraxia. He and his twin brother are 2.5 y/o. His brother has a bad speech and comprehension delay, but is getting better with a lot of new words. Both are in our state's First Steps program. Out speech therapist says she is working in some apraxia exercises even though he's too young to be diagnosed yet.

Scott, my daughter, now 7, is in an enrichment reading class at her school. (Not gifted, just enrichment.) She is a very bright girl, and remembers everything. I suspect her ability to remember "moves" to songs at school and church is all part of her signing days. :)

This is so encouraging. My daughter, now 4, was diagnosed with apraxia after about 5 months of speech with very little progress. Thankfully, she was bumped up to twice a week SL therapy, and was starting to show a little more growth and a little more when she entered the preschool program like your daughter. It wasn't until about 6 months ago, she was diagnosed with Sensory Processing Disorder/Sensory Integration Disfunction, which is the likely cause of her apraxia. For her, this explained a lot and got her OT as well, with sensory focus, and her speech really started to pick up. She is still hard to understand, but she is improving! I'm so thankful to Jesus for helping me get over that initial shock/fear/grief/anger/embarrassment that I had when I first found out. The hardest part was how it changed her sweet, lovable personality into a child who was anything but. I don't know anyone else who has had a child with apraxia, so thank you for sharing! It is so encouraging to me!